Shine a light for autism - and make a difference

AS a parent, there is something very special and endearing about your child falling asleep in your arms; the warmth and closeness of their body, the steady breathing, that adorable innocence written all over their face, and the light touch of their arm resting against your chest. 

Of course, as the years skip by so the age of innocence passes as those special moments are consigned to the overflowing locker of life's cherished memories, only to be repeated in adulthood when your son or daughter returns to you at a time of stress and trauma.

For my son Ross, at the age of 15, he is no longer a child, yet his severe autism prolongs that age of innocence. At the weekend, as he eased his head into the crook of my arm drifting off to sleep, I wondered what thoughts filled his head? What does he dream of, and, for someone who has never uttered a sentence in his life, what language fills his head.

Although there is much we know about autism, theirs is still a cotton wool world filled with mystery and misunderstanding.

It is why World Autism Awareness Day on April 2nd was an important event which put the condition, which touches the lives of two million people in the UK, into everyone's sharp focus.

This was not about tokenism, as some mealy-mouthed national awareness days have fast become when the wearing of a flower or ribbon is deemed a popularity vote, such as ticking a "like" button on a Facebook page.

Autism, like Aids, is hidden. It's a condition bathed in mystery, prejudice and misunderstanding. That's why there was immense value to autism awareness day, but did it succeed?

Three weeks ago I was pleased to speak at an autism awareness workshop in Swindon organised by the Rotarians from District 1110 eClub. I spoke about the Wiltshire autism alert card which was launched by the Swindon branch of the National Autistic Society in conjunction with Wiltshire Police two years ago www.swindonlink.com/news/launch-of-the-autism-alert-card-in-wiltshire-

Man with badger-like hair speaks
about the autism alert card

I had no idea what to expect from the day, whether this would simply serve as an information session, a talking shop, or a day of action.

There were some interesting presentations including one from Swindon South MP Robert Buckland, chairman of the All-Party Parliamentary Group on Autism, who spoke about the implications of the Children and Families Bill, which will see the biggest overhaul of the special education needs system in 30 years.

Sally Grubb and Oriana Morrison-Clarke from the Swindon branch of the NAS highlighted about how the society crucially helps those with autism and provides support for their carers.

Jackie Smith, head teacher at Uplands School, a special school in North Swindon where the workshop was held, turned the spotlight on an imaginative initiative called The Shop; a charity shop which is run by students with severe or profound learning disabilities.

Most fascinating of all was a double-header presentation from community nurse Kirk Anderson and psychologist Simon Kitson who provided an interesting insight into the thought processes and strategies adopted by those with autism. It was a terrific eye-opener and, for example, helped me understand more why Ross tends to walk around with his fingers in his ears.

But a talking shop it wasn't. Thanks to the persuasive skills of the energetic Tim Mason, president of Rotary District 1100 eClub and his erstwhile partner in crime, Lorna Breslin, deputy head at Uplands, they cajoled delegates into joining them in a plan of action.

This included setting up a task and finish group to look at how the District 1110 eClub can work in partnership with the community to promote awareness of autism, as well as developing a scheme which accredits businesses and workplaces which are autism aware. Now that is a great idea.

Taking the excellent example of Uplands School, they also want to develop work experience, employment opportunities and social enterprises to provide real jobs for folk with autism.

These are all credible, sustainable ideas with potential which could make a real difference to those with autism, to help them realise they can be of value in their community and not simply written off.

Perhaps the boldest idea, however, was to turn Swindon blue on World Autism Awareness Day.

Just as many cities across the UK choose to light up their buildings red to mark World Aids Day, so the idea was floated about doing the same in Swindon for autism, whose key colour is blue - autism is five times more common in boys (1 in 54) and among girls (1 in 252), so the colour represents boys diagnosed with autism.

Some towns and cities in America and elsewhere in the world make this very public declaration of awareness, less so in the UK. With little more than two weeks before World Autism Awareness Day, I severely doubted whether this laudable goal in Swindon would be achieved.

But Tim Mason is not a man who is easily defeated and so on April 2nd, the John Murray Building (the tallest building in Swindon), the iconic 160-year-old Christ Church in Old Town, as well as the former Town Hall were all turned blue at night. What an amazing achievement in such a short period of time.

On April 2nd, social networking was lit up with autism awareness day messages - slogans and logos - and I believe this proved to be a major force for change.

In Eastbourne where I work and live, the Town Hall clock always glows crimson red on World Aids Day - a true beacon across the seaside town supporting a worthy cause. But on April 2nd in Eastbourne, the only blue could be found in the frozen faces of folks braced against a chill easterly wind blowing off the English Channel.

It was a similar story at other towns in the UK born out of blissful ignorance. If only there were more Tim Masons around who are powerful catalysts for action and who can makes things happen.

Let's hope that what took place in Swindon earlier this month will provide a domino effect for World Autism Awareness Day in 2014. Not tokenism, not box ticking, but providing a beacon for change among a more tolerant and understanding society, which takes care of those who are disadvantaged and don't all have a voice.

Lorna Breslin and Tim Mason use Post-It notes and plenty of persuasion to ensure actions
and not words were the lingering memory of the Autism Awareness Workshop in Swindon last month.